DON’T CHILDREN WITH A RARE DISEASE DESERVE FAIR TREATMENT?

I am sharing this story about two beautiful little girls that are fighting a rare disease.  If a disease is considered ‘rare’, research is probably going to be impossible to fund.  Who would want to do all of that work for just a few?  Also, these children, all children with a rare disease, will not have drugs specific to their illness because Big Pharma wouldn’t want to produce a drug that they would not be benefitting financially from.  These children are living painful, sometimes debilitating, and often shortened lives, and they and their families deserve as much care as any child.  Please read:

http://wtnh.com/2015/06/10/celebs-rally-behind-social-media-campaign-for-little-girls-with-rare-brain-disorder/

AM I LUCKY?

Here is another article about how young people with chronic illnesses are treated.  There is no understanding or respect.  This woman’s illness is not completely invisible.  I thing that I would notice if a twenty-three year old woman came into the ER with an oxygen tank connected to a tube that traveled up into two little prongs in her nose attempting to breathe to live a little longer.  How insensitive are we as a society that we can not understand that she may need help more than you at the moment?  I applaud this young lady for being strong and coming out to answer that woman, even if she didn’t have the strength in the beginning.

http://themighty.com/2015/06/to-the-woman-in-the-er-waiting-room-who-told-me-i-was-lucky1/